For me, the first sign something was wrong happened at night. I tossed and turned. I had vivid and bizarre nightmares (like the one where I was supposed to poison Niles fro Frasier, and I was very upset about it). Sleep quickly became an enemy. I was constantly tired. I began to feel sore everywhere, especially in my shoulders and neck.
Initially, the doctor I saw said it was probably my weight and possible sleep apnea. I was tested, shortly after moving to Colorado. I did not have enough apnea episodes (everyone has some). I was considered to NOT have sleep apnea. They did, however, notice that I didn't seem to cycle through the stages of sleep properly. I would start to dream very quickly, which typically happens in REM sleep. The problem is, I never went into the stages of so-called "deep-sleep." So, I woke up exhausted, and because of my dreams, I felt as though I'd been going all night long.
I ignored my symptoms. Pain began to wake me - probably in part because I no longer was able to achieve deep sleep. At one point, I joined a gym. I did 40 minutes on the treadmill three or four times a week. Everyone told me exercise would equate better sleep. It didn't. Worse, I wound up injured. After about four months, my left knee began to be a major problem. I had to stop working out and started physical therapy. This was my second clue that something was wrong.
The physical therapist I saw told me that the problem I had was not actually my knee. She explained the the muscles in my thigh were so tight they were pulling on the knee cap and making it hurt. I worked with her for a few weeks, but then scheduling conflicts meant I stopped going. My knee slowly began to feel better, and I figured it was just related to the treadmill.
When Greg had his first clear symptom of MS, I was doing massive amounts of research to try to explain what he was feeling. I stumbled upon a description of fibromyalgia. I read it thoroughly and with an open mind. Not for myself, but for him. It was clear from almost the start that he didn't have the right symptoms, but the more I read, the more I could not ignore that I had the right ones.
I printed out the chart the illustrates the 18 tender spots patients with fibro typically have their worst pain. I had Greg put pressure on all of the spots. 15 of them reacted painfully. The diagnostic criteria for fibro is 11 of 18 (http://adam.about.com/ency
I bought a book about the disorder and began to ask my doctor questions. She agreed it was very likely, but since she is not a rheumatologist she didn't diagnose me with fibromyalgia. She eventually would send me to one, which turned out to be a laughable experience and resulted in my writing the doctor a letter about patient treatment.
So, here's what a day in my life is like.
It's morning. My eyes open reluctantly. I have tossed and turned a lot throughout the night, trying to find a position that doesn't put pressure on one of my tender spots. The last time my husband did the test for me, all 18 spots reacted with pain. I do not want to get out of bed because standing will likely hurt. I am exhausted and want to sleep. I know, however, that sleeping won't help and staying in bed will hurt, too. I can't win, so I crawl out of bed and test my body to find out how badly it is hurting. On a good day, I won't need to start off with Vicodin or Flexeril (a muscle relaxer). On a bad day, I won't be able to do anything without at least one of the two. On my worst days, I need both. This particular morning, I am in between a good day and a bad one. Fortunately, I don't have to drive to work this morning, so I take a muscle relaxer and sit for a while to debate breakfast and see if the pill helps.
I do not typically use caffeinated drinks to get me through. Caffeine doesn't generally do much for me anyway. This particular morning, however, I am already especially exhausted, and I know the muscle relaxer will enhance that, so I grab a Frappucino from the fridge, hoping it gives me enough of a boost to get started.
I am working on a paper for a class I'm taking as part of my graduate degree. I try to read some journal articles on the computer screen. My brain is easily sidetracked, though, and the words seem to move the longer I stare. I am unable to absorb the material, so I have to print it and try to focus using highlighters and notes in the margins. My once amazing memory is now plagued by lack of sleep, and forgetfulness is a major issue for me. I do not retain information as well as I used to, and I've asked the school for ADA accommodations. Since my program is entirely online, it's essential that I get the ADA office to send me books. I simply cannot read them on the computer. There are two reasons for this... one is the concentration issue, the other is that sitting at my desk too long can make the pain much worse. I get the printed out article and sit down with it, but between the muscle relaxer and my exhaustion, I feel like I am getting nowhere fast.
There was once a TV commercial on what adult ADD feels like, and they compared it to chronic channel surfing. This is how my concentration is most days. I am unable to focus on anything for all that long, and need to work carefully to minimize distractions and maintain my concentration. With diligent work, it still all comes together, but some days I have to accept that I am unable to focus enough. I have to give in and let myself take the time to regain focus.
This is one of those mornings. Even the printed article seems to taunt me. I simply can't keep my focus, and I need to do something mindless that won't cause my pain to worsen.
I get through the day without Vicodin. In general, I average one pill every other day. It doesn't actually work out that way, but 30 pills lasts me about two months. With my family history of addiction, I am absolutely paranoid about the Vicodin. I do not take it unless I'm really, really hurting. NSAIDS like Aleve or Advil do nothing to ease my pain, mostly because they are anti-inflammatories and there's little evidence to show that muscle pain caused by fibro is actually an inflammation. Worse, they upset my stomach, and I already have issues that are, yup, probably related to fibro.
When it gets close to bedtime I struggle. I am exhausted, as always, but sleep has become so unpleasant. It's my nemesis. I know I will likely sleep badly, and there is an anxiety now when it is time for bed. Furthermore, the later I stay up, the more soundly I sleep... the problem is, when I need to get up and drive to work, I can't afford to do anything that makes my "fibro fog" worse. I *have* to try to sleep... even if it's usually restless, I have to get as much of it as possible.
As for the pain... think about the body aches you get with the flu. I have that non-stop. On a good day, my pain level might go as low as a four... but that is a rare, exceptionally good day. Typically it hovers around a 5 or 6 with some variation throughout the day. On a bad day, it might jump to an 8 or a 9. There are days when the frustration and pain are so intense, I just cry.
I try really hard not to whine or complain too much. I limit my whining to an update in my status on Yahoo or here on facebook. I have limitations, though, and I've learned that to ignore them is to pay the price. Ironing or doing dishes or standing in a long, slow line are the hardest things for me. Standing still causes me far more pain than walking or sitting. Stress exacerbates my symptoms and my worsens my pain. The tender points that are most sensitive for me are in my neck and shoulders, so any tension makes that pain far worse. Tension headaches are a common issue, though usually they aren't that bad (at least compared to what I'm already used to dealing with).
I have TMJ, which is common amongst those of us with fibro. I have to be very careful when I yawn, as I've twice sprained my jaw simply by yawning too widely. A sprained jaw equals not being able to talk much and eating mushy foods for about ten days... and it just plain hurts.
These are the broad strokes of what it's like to live in my body. I've tried all of the meds that I can. I can't take Cymbalta because that type of anti-depressant actually makes me crazy. Gabapentin made me crazy. Lyrica did absolutely nothing, good or bad (and it's damn expensive, even with insurance). I'm on Wellbutrin for depression, which is also common in fibro (not surprisingly considering the chronic pain and lack of sleep). I take Xanax for anxiety and when I have weird electrical issues with my legs (RLS sort of sensations that generally only happen when I'm very tired).
Every day I struggle... but I push onward because what else is there to do? Give up? No, thanks. Not for me. But some days I break down a little, and there are chores I want to do and can't... sometimes the dishes sit for several days, but so what? In the grand scheme of things, a spotless house really isn't that important. I was never a neat freak, and now I just have to accept that some things need to wait or I need help. I do what I can, I push myself as far as I can without going too far... because if I do that, I will have a flare. My pain will become far worse, and I'll be even more restricted in what I can do.
It's not easy. There are days when I don't want to get out of bed... where I just want to hide from the world and say, thanks, I'll pass. I don't. I get up and do my best. I try my hardest to never let pain be an excuse, unless it's truly valid. I don't take advantage of my accommodations with school. I use them as tools, when needed, and otherwise persevere through the pain and "fog."
I think, overall, I handle it fairly well... and that's something that makes me feel pretty damn proud.
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